In a nutshell – the proposal is to allow students to score as low as 45 on “any” Regents test – except math and English – but must compensate that with a 65 or higher on any other regents exam.

I filled out the form and here is my response:

Reasons/Recommendations:

I am disappointed in the recommendation. I don’t believe it addresses the problem created when the RCT was eliminated – and it will not enable more students with disabilities to earn a high school diploma. The Regents exit exam approach seems to be based on the assumption that a high school diploma is the entry ticket to college; rather than a high school diploma is an entry ticket to independent life – where one option is college.

The question is – what subset of students with disabilities is this proposal intended to support? It seems it is designed to help those students who have challenges remembering the facts from history or science. (the only Regents tests that the revised safety net applies to). It does assume that the student has average skills in another area to compensate for his below average skills in science or social studies. This is so unlikely a scenario that this proposal only applies to super subset of students with IEPs. (Maybe you are thinking of the stereotypical student with Aspergers who is a math wiz earns 95 on the math regents exam to compensate for his 45 on the social studies exam.)

This proposal does NOT address the needs of students with disabilities who in the past were allowed to take the RCT exam. I thought the point of the proposal was to address the loss of that alternative exam. And it does not address the challenges for students with disabilities in conceptual content like math.

This is like asking a person with one hand to play golf but you’ll still let them win with a 55% (or in golf it would be 155%). Rather, let the one handed person play tennis and win with 85% . Think of math (algebra) as the equivalent challenge to a student with autism and other developmental disabilities as golf is to a one handed person.

What is needed is a different exam, not accepting a lower score. As you see more students with autism being included in mainstream you will notice that in most cases math is the biggest challenge, It does not matter how good the teacher is, algebra is not something that most autistic brains grasp. (Ask Temple Grandin) It is like asking a deaf person to appreciate music.

I was expecting you to come up with a math replacement of the RCT that will assess functional math skills. Ideally you would approve a curriculum of business and consumer math, and create an exam for that. That not only would be completely practical content, but it would also enable them to have a diploma – which leads to a job and a better chance for an independent life.

That is what we want for our children with disabilities – an independent life.

PS – without getting a high school diploma many students will stay in high school, or in education programs funded by school districts until they are 21. (Think more cost for school districts).

When is it a good decision to make a change to something that is “good”? How do you provide challenging opportunities for your child without overwhelming them and causing a setback? Is it ok to push your kid even if she prefers not to be?

It’s likely that most parents ask themselves these questions as they raise their children. Have you?? But, typically, by the time most kids turn 16 they able to participate in these decisions that impact her life.

My 16 year old is not typical. She has difficulty with language, with social interactions, and with change. So I feel compelled to intervene on all three areas of challenge. I know she thinks (and says) I always push her. But how could I not? I know she has potential beyond what she would allow herself to achieve. And beyond what any teacher, school administrator, camp director, or counselor would assume. And since my vision for her is to be able to live an independent life, I feel I can’t go easy and always let her lead the pace of challenge. (Oh right, what about her own vision for her life? I am certain she too wants to become an independent adult. In fact, this May she told me that “now that I am 16, I can make my own decisions.”)

Isabelle had gone to one summer overnight camp for 4 happy summers (age 12-15) She had known 6 of the campers even before she started her first summer. And then she expended her friendships over the years. During the school year she joined the monthly camper get togethers in the New York City area.- this was the focus of her social life.

But after last summer’s camp season I started to think it was time to kick it up a notch for Isabelle. While camp was good at developing social skills, I had always felt the activities were not challenging enough for her. They did not work on developing any skills in athletics and they did not teach competition, deliberately avoided it. (An aside – I always notice how programs for kids with disabilities seem to boast that they are non-competitive. I think this is a disservice to our kids – they need to learn how to work to their best as individuals and as a team, get the reward of success, learn things don’t always go their way despite all their efforts, learn that there are in bounds and out of bounds, learn how to defend their “territory” and learn to be assertive – in a supportive setting. I know most parents do not agree with me about this.) I had made some requests to the director but he had a formula and did not seem open to making changes.

On the other hand this camp provided lots of opportunity for Isabelle to do what she likes best- to perform: talent shows, plays, guest band. The director loves music and made that a hallmark of camp.

But as the girls in her cohort aged, the more socially mature and capable ones did not return, and were replaced with girls who had more had more significant social and behavioral challenges.

Last fall a friend told me her daughter had really enjoyed another camp last summer and so we got our girls together. Once Isabelle heard that there was horse back riding at this other camp, she got excited. Combine that with hearing who would and would not be coming back to her old camp in her age group, she was convinced to make the change.

One of Isabelle’s favorite TV shows is Phineas and Ferb an animated show about two brothers who plan outrageous activates during summer vacation. To get out of a rut, Phineas often says “Let’s mix it up a little.” It’s become one of Isabelle’s expressions (she scripts many of her Disney TV shows and movies and incorporates the scripts into her conversations – kind of clever!)

So we decided to mix it up a little. I enrolled her in the new camp for 7 weeks. Then I had to figure out how to get her to camp since it is nearly 3 hours north of Toronto.

Isabelle seemed excited and told her old camp friends she was not returning. (They seemed disappointed.)

Campers post season get together – Isabelle last on left.

I started to have some concerns when I found the director resistant to introducing us to other campers from our area. He was worried that if Isabelle did not connect well with one person that she would think that everyone at camp would be like that. His comment surprised me because – he should know- people with autism typically do not generalize. I called with other questions since there were no parents I could talk to and he was put off by my questions. Perhaps I should have listened to my gut – several times. But I found I was on a path and did not want to go back.

After Isabelle was enrolled, we learned that the one girl she knew had changed her plans and was not going to attend the first session of camp. That meant Isabelle would not know anyone at camp! And no one at camp knew her. We never visited the camp or met the director – he just requested I send a video of her that I recorded and encouraged us to register. I guess that was just too big a risk that I took.

In addition, I learned that, unlike her previous camp (and most others) this camp did not use a web service to post photos so parents could see camp life nightly. They did not allow camper-parent calls and did not have scheduled parent-counselor calls. So I would have no contact what so ever!

On July first Isabelle and I flew up to the Toronto airport and with some searching we found some camp staff waiting. I was not very impressed with our greeting, but I chatted with the counselors – trying to get more information about camp and helping Isabelle get connected with the staff and the one other girl camper waiting for others to arrive before taking a bus on to camp. After about an hour Isabelle seemed ready for me to depart so we hugged good bye and I flew home (with huge anxiety.)

I called camp and got to talk with the counselor twice in the first two weeks; learning that Isabelle was having difficulty (but not clear why). She was “running away” when she was stressed (typical) but they did not seem to understand her need to separate. So I was able to convince the director to let Isabelle and her head counselor talk with her therapist from home. (Her wonderful therapist told me she talks to one camper every night for 5 minutes!)

Camp is also supposed to be my vacation from my work of parenting a child with special needs. But July was the most unrelaxing month that I had had in a long time. We got a few letters from Isabelle and they all said ‘I’m having tons of fun” but as I said, her language and writing skills are not very sophisticated, and she did say she was writing during her academic period (ie, a counselor was with her).

Finally visiting day came.

Isabelle greets Dad at camp

We had a wonderful reunion with Isabelle. And I got to see what really was happening at camp. We saw her in the camp performance, in the ropes, waterskiing, and swimming.

The director never made an effort to greet parents; I had to go searching for him. And he was not very interested in talking. None of Isabelle’s bunkmates were introduced to us and none seemed to acknowledge her. The counselors, while very sweet, seemed inexperienced. They did say they enjoyed Isabelle, that the rest of group was “very negative” and that they were surprised (!?) at how intolerant they each were with each other’s challenges and oddities. All the girls were going home except Isabelle. We spent the day watching her in various activities and in the camp play. We did feel she was getting the challenge in activities that we had hoped for. She was climbing, skiing, swimming and horseback riding. The camp facilities were very nice but the food was horrible.

In the end, I felt that Isabelle was happy but I still questioned if the change was a good thing.

Paul and I made a “side by side” comparison. Note “new camp” is only based on our one day visit. Ratings: 1-5 (where 1= poor and 5 = outstanding)